Published Thursday, 03 October 2013
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Fiona Murphy and Robert Fitzsimmons say their daughter means everything to them and they just want to make sure they're helping her as best they can.
Little Caoilte Fitzsimmons is just 16 weeks old and looks like a normal, healthy, happy baby but she has a rare condition that strikes just 1 in 6,000 children.
Spinal muscular atrophy is a devastating genetic disease and babies with the condition rarely live past their first birthday.
The diagnosis was only confirmed in the past week but medical staff knew there was a problem within hours of her birth.
"It was the night she was born, the Wednesday night they took her for her bath after and the midwifes noticed that she went limp on them in the bath. So they called down for the paediatrician and they started carrying out tests. Because they noticed she was very floppy," mum Fiona explained.
"It affects her breathing, because she cannot move about too much, her muscles become stiff and her bones, so you have to exercise her every hour and she has to go physio once a week, it affects her feeding too as she does not feed too well."
As far as Robert and Fiona are aware she is the only baby in Northern Ireland with Type 1 SMA.
There are UK charities based in England which offer support but the couple want to make contact with other parents locally whose children have had the same diagnosis.
"Because she is the only one in Northern Ireland with it, they don't know what it is really about, so just for other parents who know a bit about it and can help us out," Fiona continued.
"We don't know if we are doing the right things for her, we don't know what to expect.
"We are stuck in limbo, because people are saying she will live for a year but other people say she can live for two years, or that 80% die within the first year.
"So we are taking every day, not knowing. Just in the dark with it."
Robert and Fiona know their time with Caoilte is limited but they are enjoying every precious minute they can with her.
Caoilte's father added: "We just take every day as it comes, every day is a bonus, it is another day with her."
© UTV News